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Questions to Ponder about End-of-Life Care Legislation

Isabelle and Ward O'Connor of the Vivere Group offer questions to ponder about Quebec's new Euthanasia legislation.

1. Do euthanasia and palliative care go together?

The palliative care philosophy is based on respect for the natural process of death. Matching induced death by euthanasia ("medical aid in dying") with palliative care in a "continuum of end of life care" is it logical? Doing so risks creating conflict and confusion. This is the view of, among others, le Réseau de soins palliatifs du Québec (RSPQ), as recorded in its deposition regarding the subject legislation. The RSPQ affirms that "Euthanasia is not a treatment." Further, it is important to know that the Fédération du Mouvement Albatros of Québec (FMAQ) adopted unanimously a resolution in support of the RSPQ position.

2. Is End of Life Care Legislation valid?

It is important to know that induced death, either by euthanasia or assisted suicide, is a crime in Canada, although the authors and promoters of the legislation on end-of-life care categorically deny that "medical aid in dying" means "euthanasia", hoping that their semantic game will evade Canada’s Criminal Code. You should know that Canada’s Attorney General announced that he will challenge the

validity of this legislation, pending the Supreme Court of Canada ruling in the case Carter-Taylor case heard October 5, 2014, with a decision expected within six months – i.e., no later than April 2015. The Carter-Taylor case challenges the validity of criminalizing death induced by euthanasia or assisted suicide.

3. Would government induced death jeopardize the right to personal security?

Consent and intent are difficult to prove, and the weak, vulnerable, disabled, elderly, depressed, illiterate or otherwise physically or mentally vulnerable are very easy to manipulate. Their consent can also be difficult to interpret. Substituted consent is another important issue, appearing in the Quebec law (Articles 47, 48, 55) as does presumed consent (Articles 57 and 58 ). The mistreatment of these large segments of the population, especially from relatives and institutions, being widely and well documented, as are discrimination and other social exclusionary pressures of exclusion, is such a precarious secure environment in our health care facilities acceptable?

The Quebec legislation in no way restricts euthanasia for people diagnosed with terminal illness. It is applicable to anyone with a chronic degenerative disease, whether that person is dying or not.

In addition, each year in Quebec, more than 350,000 medical errors are reported, the vast majority of which are injection errors (Ménard report). As euthanasia is done via an injection, do not the number of medical errors argue against the practice of euthanasia?

Finally, the end-of-life care legislation leaves it to the physician to ensure that consent to euthanasia is not the result of undue pressures arising from different sources. What training in psychology and police detection methods will the doctor receive for this purpose? What budget he will have to conduct the needed investigation? Abuse is both pernicious and very clever thing to detect for he seeks to detect it.

Martin Pistorius in his wheelchair in 1992. (Courtesy of Martin Pistorius via HarperCollins)
“Lynchian,” according to David Foster Wallace, “refers to a particular kind of irony where the very macabre and the very mundane combine in such a way as to reveal the former’s perpetual containment within the latter.”
Perhaps no other word better describes the onetime fate of Martin Pistorius, a South African man who spent more than a decade trapped inside his own body involuntarily watching “Barney” reruns day after day.
“I cannot even express to you how much I hated Barney,” Martin told NPR during the first episode of a new program on human behavior, “Invisibilia.”

Pistorius at a special needs center during his illness. (Courtesy of Martin Pistorius via HarperCollins)
The rest of the world thought Pistorius was a vegetable, according to NPR. Doctors had told his family as much after he’d fallen into a mysterious coma as a healthy 12-year-old before emerging several years later completely paralyzed, unable to communicate with the outside world. The nightmarish condition, which can be caused by stroke or an overdose of medication, is known as “total locked-in syndrome,” and it has no cure, according to the National Institute of Neurological Disorders and Stroke.
In a first-person account for the Daily Mail, Pistorius described the period after he slipped into a coma:
I was completely unresponsive. I was in a virtual coma but the doctors couldn’t diagnose what had caused it.
I was treated for tuberculosis and cryptococcal meningitis, but no conclusive diagnosis was made. Medication after medication was tried – to no effect. I’d travelled beyond what medicine understood. I was lost in the land where dragons lie and no one could rescue me.
When he finally did awaken in the early 1990s, around the age of 14 or 15, Pistorius emerged in a dreary fog as his mind gradually rebooted itself.
“I had a sense that something was wrong,” he told “The Wright Stuff,” a British TV program. “I suppose you can almost describe it like when you are trying to wake up from a dream, but can’t.”
At some point, between the ages of 16 and 19, Pistorius fully regained his consciousness — only to be confronted by the jarring reality of his situation, according to NPR. He was trapped, marooned on a deserted island within himself, his only companion his despondent thoughts, which had begun to eat away at whatever hope he had left.

“Ghost Boy” by Martin Pistorius. (Courtesy of HarperCollins)
Pistorius told himself nobody would ever love him and that, for as long as he remained alive, he was doomed, according to NPR.
“It’s like a cold, sinister frustrating and frightening feeling, which seems to throttle every cell in your body,” he told “The Wright Stuff” about the feeling of being trapped. “It’s was like you’re a ghost witnessing life unfold in front of you and nobody knows you are there.”
But Pistorius was there, so much so that he remembered with clarity the death of Princess Diana, the inauguration of Nelson Mandela and the Sept. 11 terror attacks. He watched his relatives go about their lives and listened to the things they said, though they had no idea he could hear them.
“But nobody thought I was even aware of them, let alone the fact that I not only knew about them, but was shocked or excited or saddened like everyone else,” he told “The Wright Stuff.”
He described the feeling in more detail for the Daily Mail:
My father’s faith in me was stretched almost to breaking point – I don’t think it ever disappeared completely. Each day Dad, a mechanical engineer, washed and fed me, dressed and lifted me. A bear of a man with a huge beard like Father Christmas, his hands were always gentle.
I would try to get him to under-stand I had returned, willing my arm to work. “Dad! I’m here! Can’t you see?” But he didn’t notice me.
He continued to undress me and my gaze slid to my arm. It was not moving: its only outward manifestation was a muscular twitch close to my elbow. The movement was so tiny I knew my father would never notice it.
Rage filled me. I felt sure I’d burst. I gasped for breath. “Are you OK, boy?” Dad asked as he heard my ragged breathing and looked up.
I could only stare, praying my silent desperation would somehow communicate itself.
“Let’s get you into bed, shall we?”

Pistorius giving a presentation in Israel. (Courtesy of Martin Pistorius via HarperCollins)
His recovery began with Barney, the big purple dinosaur he was forced to watch on loop at the special care center where he spent his days, according to NPR. Pistorius decided he’d had enough and dedicated his thoughts to something that offered some modicum of control over his reality, such as telling time by tracking sunlight in a room.
“I can still tell the time of day by the shadows,” he told NPR.
As his mind improved and Pistorius learned to “reframe” and “reintepret” his “ugliest thoughts,” his health improved, too, according to NPR. By age, 26, he was able to use a computer to communicate, shocking his family.
“When he gets the tools to communicate, he forges ahead,” his mother, Joan Pistorius, told NPR.
It wasn’t long before he’d gotten a job, enrolled in college to study computer science, started a web company and, more recently, written a book, “Ghost Boy,” which was published in 2011. The Sunday Times calls it “a deeply affecting and at times shocking book” that recalls “The Diving Bell and the Butterfly” — “but with a happy ending.”
Martin Pistorius and his wife, Joanna, tell their story in this 2010 video that was submitted to publishers as a supplement to the manuscript for “Ghost Boy.” (Martin Pistorius)
Indeed, Pistorius also fell in love and got married. Speaking through a device that allows him to talk with the help of a computer keyboard, he can be seen on video discussing the book and his wife in the same sitting.
He’s now living happily in the United Kingdom with his wife, Joanna, leading a life that is perfectly regular, which is exactly how he prefers it.
“I am happy with who I am,” he told “The Wright Stuff.”
“Yes, life has its challenges, but then again, whose doesn’t.”